Planning Family-Friendly Webinars: Navigating the Medical System for Children with Autism Spectrum Disorder Jessica Scott 1 , Amy Matz 2 , Nancy Murray 3 , Benjamin Handen 4 , Miya Asato 5 LEND Center at the University of Pittsburgh and Children ’ s Hospital of Pittsburgh of UPMC.
System for Children with Autism Spectrum Disorder
Jessica Scott 1, Amy Matz 2, Nancy Murray 3, Benjamin Handen 4, Miya Asato 5
LEND Center at the University of Pittsburgh and Children’s Hospital of Pittsburgh of UPMC
The physical webinar recording resources are located in ACHIEVA’s offices; however, the webinars could be recorded remotely via the phone thus allowing the trainees to easily accommodate guest speakers. Each recording began with an introduction to the topic by the LEND trainees, followed by questions for the guest speaker.
Publicize the Webinars
Webinars were advertised via email blasts by ACHIEVA, ABOARD, the Pennsylvania Medical Home Initiative, Include Me From the Start, and the Early Intervention Program at the University of Pittsburgh. A link to the webinars also appeared on several of the participant’s personal and organizational Facebook pages and Twitter feeds.
Collect Viewership and Survey Feedback
Trainees obtained approval from the University of Pittsburgh’s Internal Review Board to conduct an online survey following the webinar. Webinar viewers are automatically directed to the optional survey where they can provide trainees with valuable feedback.
“Navigating the Medical System” is the second LEND – ACHIEVA partnership project to produce webinars for families impacted by ASD. According to viewership results, the series “Navigating the Medical System for Children with Autism Spectrum Disorder” has received higher volumes of traffic in a shorter period of time than the previous webinars. Thus far, the webinars have achieved 64.8% total views and in 1/10th the time when compared to the last webinar series. These increases may be the result of the university-community partnerships, which expanded avenues for promoting webinar viewership. In addition to increased viewership, the process of creating this webinar series showed collaborative capacity between organizations that had not explicitly worked together before. Also, LEND trainees had the added benefit of becoming more familiar with regional resources that will help them better assist families they serve in the future.
Webinar content was shaped by both professional and family expertise and by principles of family centered practice . Focus group discussion lead trainees to identify topic areas of importance to families who are experienced at interacting with the medical system and professionals. Trainees incorporated family members as guest speakers to ensure that the webinars represented both professional and family perspectives. As a result, the webinars created provide a breadth of detailed information and advice. At this time, survey results are consistently positive. Trainees will continue to review survey feedback to assess the current series and help shape the content of future webinars. The online format has other benefits as well. Guest speakers are able to participate remotely via the phone, opening up the possibilities for collaboration and making the process more flexible. It also allows families greater accessibility to information, as well as building the capacity to reach wider audiences. All ACHIEVA webinars are free to access and individuals with internet access may listen to webinar recordings at their convenience.
Despite making information about medical conditions and resources available online, webinar viewership remains low. Trainees would like to examine barriers families face to accessing webinars and explore ways to better attract viewership in the future.
Certain genetic syndromes, medical conditions, and behavioral symptoms are common in children diagnosed with Autistic Spectrum Disorders (ASD). In many cases, co-morbidities such as sleep disorders, epilepsy, digestive difficulties, and anxiety compound the challenges of caring for children with ASD and often require specialty care. For these reasons, it is important for children to have a thorough medical evaluation to clarify their diagnosis and/or confirm other co-existing conditions. Also, once diagnosis is confirmed, children with ASD must obtain ongoing medical care. Unfortunately, navigating the medical system may be a challenging process for families. The goal of this university-community partnership is to provide family-centered education on navigating the medical system for families of children with ASD that are accessible via a webinar training format.
Webinars from the “Navigating the Medical System for Children with Autism Spectrum Disorder” series were viewed 70 times over approximately 14 days, which equates to approximately 5 views a day. Comparatively, the previous ACHIEVA webinars on ASD produced by LEND trainees received 48 views within their first two weeks online, which comes to an average of only 2 views a day. The following graph illustrates the number of views per topic for the webinar series:
Response to the post webinar surveys has been limited, however the feedback gathered thus far consistently reports that viewers would recommend the webinars to others. Respondents either agreed or strongly agreed that the webinars increased their knowledge; that enough time was allotted for the webinars; and that the speakers were knowledgeable about the presented topics. Respondents describe themselves as professional/family members and self-advocate/professionals. Most respondents learned of the webinars through the ACHIEVA website, or from a coworker/colleague. Respondents were primarily from Allegheny County in southwestern Pennsylvania.